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Old 08-14-2009, 12:13 PM   #1
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Red face Followup scan for cancer & recent labs ADVICE PLEASE

Hi all I'll try not to make this super long, but my frustration level is at an all time HIGH, so forgive me if I sound FRUSTRATED (I AM). I spent alot of time on this board reading, trying to find some answers / solutions to how I was feeling. I was on 137 mcg of levo (8 doses per week - doubling on Sundays) for several months. After doing quite a bit of reading here, I went back to my endo & asked to be switched to synthroid and BEGGED for some cytomel. I **seemed** to feel **slightly** better, but no big changes.

After several weeks of implementing these changes, here are my labs:

TSH .02
FT4 1.16 (range .7 - 1.4)
FT3 3.06 (range 2.30 - 4.20)
Vit D 41 (range > 30)
Thyroglobulin - undetectable
antibody is 21 - endo said should be 20

I made the mistake (the GRAVE mistake) of not really looking at my labs while I was on the appt with her, but telling her I didn't feel much difference with the added cytomel. She said I could stop taking it and I could tell she felt quite vindicated that it didn't make a difference in how I was feeling. Whenever I mention this board to her I can see her shutdown (this really frustrates me!!! Because you all ROCK!!)

After looking at the labs I can **see** I need MORE cytomel!! Also - can you please share how you come up with the percentages? You divide what into what?? That way I can figure them out for myself and not always bug you all Until me complaining loudly this spring as to how yucky I've been feeling, she wasn't even testing my FT3. And this is a very well respected endo downtown Seattle! Teaches at the University of Washington! The endo who pursued testing for me which found the cancer in the first place! Because of that I have the utmost respect for her (and I liker her as a person to boot). So WHY are these endos so stubborn about looking at - let alone treating T3????? When I asked her why she goes solely off of TSH she said because that level is "rock solid." She said the other levels are not stable, therefore unreliable. Oh yea - and if whenever I complain of the fatigue and depression, she always replies "I'm overtreating you for the cancer." Okay - so why do I feel like s&%@???????????

Needless to say, I left that appt feeling pretty dejected. But I can tell all of you - I feel like CRAP. CRAP CRAP CRAP!!!! The level of fatigue I am living with is like a living hell. If I push myself in the least I pay for it for DAYS. Case in point right now. I did my first ballroom comp after 2 years (before the cancer I did a comp every few months) last weekend. I am STILL incredibly exhausted from the combination of pushing myself physically, and the combo of nerves / lack of sleep - all the **stuff** that goes along with competing. Now mind you - I chose to do the comp as something FUN for me prior to my upcoming scan (which I'm nervous about - can't help it - I AM).

On top of all of this, my dear stepdad has been very ill this past year and is currently in a care facility and I'm in the middle of trying to help my mom get her bills figured out, meeting with an attorney to become power of attorney for both of them, trying to figure out what level of care he's going to need longterm. The stress from all of this is debilitating enough. Then I've got my body all whacked out on top of it!!!!!!!!!!!!!!!!

Oh - I also wanted to mention - I appreciate so MUCH that so many of you recommend AGAINST anti depressants until you get your thryoid in correct raanges. I started Paxil in 1999. With all of this thyroid stuff coming to light, and the fact that the cancer was as widespread as it was (and the doctors saying it was probably there for years & years) I really wonder how much of my "anxiety" trouble was thyroid trouble? I find it quite interesting that I have had very little anxiety / panic difficulty since the cancer. I am now tapering off the Paxil which - for those who don't know - has wicked withdrawal associated with it. It's very interesting to me that I am having no trouble tapering, and my psychiatrist (who is AWESOME) also thinks it's very possible that getting my thyroid levels right will indeed alleviate much of the panic/anxiety. {{{{sigh}}}} what a tangled WEB this can all seem to be...................................... ........................................ .

Sorry this is so long........................you guys know I usually don't rant on like this, but this has all been..................so hard...................so very hard.....................and compounded by all that's happening in my family.

So - here is my game plan now. Once I get through the scan, I am going to go back to my endo, tell her how much I appreciate and respect her, and can she PLEASE give me more cytomel???? I have read other posts that said 10 mcg was the magic level. I know she will. I just have to get over myself and be more aggressive with my own care. If for some reason she won't, I'll look for another doctor. I just WISH she wouldn't look at me like I'm crazy or something, but as time is going by and I am feeling so LOUSY, I realize that is a small price to pay for feeling better. I've read this on other posts, and I echo the sentiment here. This thyroid stuff is lonely stuff. And mind you - I've got great people in my life. Doesn't matter though. They try to understand, but they don't, because they haven't walked in these shoes. Oh - and I hear so much - "you look great"!!!! I know people mean well - especially after you tell them you've been through cancer - but sometimes - just sometimes - I wish it **showed** somehow. That - maybe on those days when we thyroid sufferers feel our worst - that we would turn **blue** or something - like from Willie Wonka & The Chocolate Factory - which character was it that swelled up and turned blue?????????? Just on the REALLY bad days

 
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